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RecipeForDisaster

New meds (LDN and Adderall), tracheomalacia...

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I may be making some progress thanks to a new doctor. He spent hours with me and had some interesting findings and ideas.

 

I just took my first dose of Adderall. It was tough to get insurance to pay for it because I'm not a kid. The prescription is for 5mg daily but I'm trying half a pill for now... other than taking it as early as possible in the morning, any tips for making the most of this? So far I am not loving the increased heart pounding... I could take some more metoprolol but I feel like that would undo some of the good effects. We are hoping for less fatigue, better exercise tolerance, and higher BP. Having to have a paper script is a pain when the doctor is far away.

 

I was also prescribed low dose naltrexone. I'm fairly eager to try this although I never considered it before the doctor brought it up. I was skeptical until I read a lot... I think it's promising! I really can't try it until I figure out how helpful the adderall is and if the side effects are tolerable. Otherwise I won't  be able to tell which effects are which. If anyone has any helpful tricks for this, too, I'd appreciate them. The only concern I really have about this one is potential nightmares, because I get that effect from other stuff, as benign as 5-HTP which helps me sleep but causes intense nightmares.

 

One other diagnosis he made was tracheomalacia. I would think that could explain my sleep apnea. Interesting-I had never thought of this either. 

 

There is some testing coming up including a "Mayo panel" for autoimmunity and MTHFR testing. I'm sure I have that based on family history and my response to supplements. If anyone has experiences with these, please share!

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@RecipeForDisaster - I take Ritalin for years - it was prescribed for fatigue and cognitive issues stemming from POTS. I tolerate it well. It also helps for ADD ( which I have ). I take the lowest dose in the morning and I really have a lot more energy and can be more active. I cannot take it at night or I can't sleep. I also used to have insomnia very badly and that also contributed to my fatigue during the day. Since taking the Ritalin I am able to do more during the day and therefore sleep better at night. I wish you great success and improvement from the Adderall!!! Hopefully the side effects are temporary - I have found that with some meds the body needs a while to adjust to it. 

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Thanks-I think I'll keep taking the tiny morning dose and see how I do. Did you have worse palpitations and chest discomfort from it? If those go away, it'll be a total win. If not, I think it will go in my bag of tricks to use when I'm doing worse, or need to be super useful... not every day.

 

I do think I had an easier time exercising, and Al's of not blacking out when I stood up today. I was definitely more sharp and alert (and awake even though I woke up at 3am) . I don't have ADD so I'm lucky I got it to go through insurance.

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I would advise you to join one of the many LDN facebook pages for help when first starting LDN. For many it goes very smoothly, but there is a small amount of people that will have some side effects to deal with when first starting. For example, vivid dreams and maybe some sleep issues the first few weeks. These groups have a wealth of experience along with good advice on how to manage. Good luck with both of these drugs. And kudos to your new doctor thats thinking outside of the box. He/she sounds like a keeper! 

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I tried adderall but also got tachycardia and palpitations so switched to modafinil.  That works well with no side effects.  I just have to top up with a bit around noon or I get a crash.

i was prescribed LDN and then my dr left the practice so I could not get it refilled.  I found another dr who would prescribe it but then she left too.  My neurologist is using it for some patients but not Dysautonomia yet.  

I was tested twice for the Mayo AAG panel, both negative.  The first time was at my initial neuro appointment. I have subsequently tested positive on the Celltrend panel and started SCIG in November. I also have an autoimmune disease, UCTD, which showed up after the Dysautonomia diagnosis.  

I have some MTFHR issue that means I can’t take certain meds for the autoimmune disease and have to take certain types of supplements but that was caught a few years back and I don’t recall exactly what the issue was.  

It sounds like you have a great Dr.  That’s so important!

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I'm still having worsened palpitations on Adderall but also much better energy. My sleep isn't worsened by it, but then I take my tiny dose around 5am. The last few nights, other things have been keeping me awake (wind, pain) and I don't feel like a zombie despite lousy sleep. That's great in itself... usually I'm ruined by a bad night of sleep.

I'm not on Facebook, drat. I've been reading about LDN a lot and the nightmares or sleep issues would be a real problem for me. I hope I don't get them! I'm also trying to figure out the best way to mix/store it since I am diluting the big tablets myself. I have a year's supply!

This doctor is wonderful and smart-he actually recommends this forum. The only problem is, he's really busy with a small staff so they do not do a good job on follow up/returning phone calls/making things happen. That's frustrating. I'm not sure he will actually do the Mayo panel-he wants someone else to order it, and I don't think they will. For some reason, I don't think my neurologist is interested in this. But, it's been years of not having a good doctor and feeling very uncared about.

I do have a newly positive ANA and this doctor thinks something autoimmune is definitely going on. Other doctors don't really think so. Also, most of them don't think MTHFR is a big deal, but I know it means precautions need to be taken. I ordered a high dose methylfolate supplement, because I already take methylcobalamin which saved me from B12 deficiency.

He didn't have any recommendations for the tracheomalacia other than see a pulmonologist :( I have way too many doctors already... and I don't think that one is really a big deal right now, especially since I always use a CPAP anyway.

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@Pistolcheck this out https://ghr.nlm.nih.gov/gene/MTHFR 

@RecipeForDisasterare you seeing a rheumatologist?  Do you have joint pain?  My 2nd rheumatologist (fired the 1st), diagnosed me with a positive ANA and on symptoms.  Some will, some won’t.  I saw a decrease in fatigue and joint pain after starting plaquenil that he prescribed.  It was small and took months to help but every bit helps.  The IG is helping too.  My joint swelling was decreased when I saw him in December and I don’t have the fatigue as bad.  Small but significant changes that should continue.

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My doctors have all told me I don't need a rheumatologist... I have some joint pain but more musculoskeletal pain. I'm going to have the Mayo autoimmune dysautonomia panel run, once some doctor figures out how to order it and get preauthorization, and maybe I'll need IVIG or immune suppression based on those results. I kind of hope not but if I need it, I'll do it. I'm hoping LDN helps either way, no matter what the heck is wrong with me.

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Hi RecipeForDisaster,

I was prescribed LDN and took it for about one month.  This was before I knew that I had POTS.  I had been diagnosed with fibromyalgia and was doing tons of research because the typical FM drugs had no positive effects for me.  I got the 4.5mg dose from a compounding pharmacy (I paid about $45 for 90days supply).  I started right out on a whole tablet before bed  I think I had one or two nights of extra weird dreams, but I have techno vivid dreams every night anyway.  I think it took a week or two for the benefits to kick in. I had a good month of next to no pain. Yay!  Then I got stressed out and the pain came back.  I tried 1/2 and 1/4 doses of LDN. I even tried a whole dose again and had the worst pain night I have had in years. I spoke with the pharmacist at the compounding pharmacy.  He wasn’t super helpful, though he tried to be.  He said some people need 6mg or more to get effect. I couldn’t find info online about dosing - was I taking too much? Not enough? Had my body adapted and needed more? Had I flooded my opioid receptors and needed less? Anyway, I was done.  I haven’t taken any more. I still get pain, but I’m hopeful that addressing the POTS will help to manage that as a root cause versus symptomatic treatment.

Since you’ve been researching, you’ve probably learned that some people take teensy doses of LDN - as in 1 mg or less. Some say to start low and work up the dose. Maybe that was my mistake, who knows. So, if your doc has any experience, go with that. I say if you’re concerned about nightmares, start low and work up. I’m super sensitive to meds but I didn’t have any issues at all - beyond the 1-2 nights of extra weird dreams. 

I find that my musculoskeletal pain is triggered by foods. At least that was the primary trigger for years. So maybe look into that as a way to manage your pain also.  I eliminated gluten, grains, nightshades, all processed foods and took vit K2 and n-acetyl-glucosamine to help with lectin sensitivity (I couldn’t tolerate ribose and the bladderwrack and other things that are recommended). That helped a ton! It was a huge challenge to eat that way, but I felt great! Now my main pain control mechanisms are knowing my limits and not pushing it, supine exercises, and a heating pad when I’m in bed (‘cause I’m tired of spending money and won’t buy a full heated blanket). 

Congrats on the smarty pants doc - hope you get things worked out with communication and follow ups. 

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I do plan on starting at 1mg nightly for 2 weeks, then 3mg, then 4.5mg. I have some pain but I am really pretty used to it and I don't list it as one of my problems. I use TENS, heating pads, chiropractic care, and distraction to manage my pain. There are too many other issues that bother me and impede my life more.

 

I'd be using this to improve energy and maybe modulate my autoimmune issues (which aren't diagnosed). Thanks-I hope I do only get a few nights of weird dreams! I got a dropper bottle to mix it in and will start soon. I just want to be able to see which effects are from this, which are from adderall, and maybe some are just me getting worse or having a bad spell like I think I'm starting now.

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